Tuesday, April 26, 2011

Andrew's Anus and the Quest [yes, he's back with Part 7!]

For 20 years, Andrew thought of the warts that occasionally sprang up on me as well . . . just warts.

I’m Andrew’s Anus, and I have HPV.

Eventually Andy realized that the human papillomavirus could lead to dysplasia and even anal cancer.

Andy had a good deal of confidence in his HIV providers, but his quest to find better care for me and my HPV uncovered a sad truth about living in the U.S.:

The best anorectal HPV care is available only in a relatively small number of large cities in a minority of states, and the clinics that offer it don’t have the capacity to treat everyone who needs their services.

Getting a high resolution anoscopy (HRA) in just such a clinic had become a priority for Andrew. He’d had three surgeries to remove HPV-related growths and lab testing had twice indicated middle grade dysplasia. Meanwhile, he kept hearing that cancers not historically considered AIDS-related were being observed more frequently in HIV patients. The point was brought home when Andy was diagnosed with a basal cell carcinoma on his left shin. It was treated successfully, and he realized there wasn’t necessarily a direct connection, but all the same . . .

Andy began to email advocates he’d met over the years for advice and referrals. A friend responded with a website that listed providers trained by one of the best anal cancer research centers in the country. The first, most obvious candidatewas inthe larger metropolitan area closest to home. Unfortunately,only PLWHA who were already patients in the local Ryan White clinic could be seen there.

Andy kept looking.

A pozcouple he’d mentored when they were newly diagnosed tried to help. Andy pestered them to find out who their HIV doctor recommended. The doc couldn’t think of anyone in the city doing HRAs, but his nurse did give the name of a reputable specialist in town. Things began to look brighter when Andy called there. “Yes we see lots of HIV positive patients,” the person on the other end of the phone responded. “Yes we do high resolution anoscopies here. Yes we accept that insurance.”

The next day Andy got a call from the medical director who apologized that there had been a misunderstanding. The practice did not perform high resolution anoscopies. The doctor was polite and curious; Andy was put in the awkward position of explaining to a big city colorectal surgeon that HRA was considered by many to be a critical tool in preventing anal cancer. “That requires a very expensive piece of equipment,” she quipped. “No, I don’t know of anyone performing HRAs in this area.”

Andy’s frustration began to edge over into anger territory.

When he attended a town hall meeting organized by a national advocacy organization as part of a regional PLWHA conference, the chair of the U.S. Presidential Advisory Council on HIV/AIDS (PACHA) asked the audience to talk freely about their concerns.

Andy stood up and asked,

“What are you going to do about the massive anorectal neglect that’s occurring in this country?"

"Rectal microbicide research is a decade behind vaginal research," he continued, "and most people who need access to screening and treatment for anal dysplasia and cancers can’t get it!” The chair agreed the issue was important and said that part of the solution was for people like Andy “to keep advocating.”

Andy picked up a new leadwhen he ran into a mentor at a fall 2009 LGBT health conference. Two researchers who were presenting at the conference were at the table. The four of them were catching up on gossip when Andy off-handedly mentioned how little luck he’d had trying to get an HRA. To his surprise, one of the presenters turned, looked Andy in the eye, and said, “I’ll do that for you.”

Although he’d known that Dr. Langston was a researcher in the field of HIV prevention, it was news to him that he also ran an anal dysplasia clinic.The hospital that housed the clinic was a 600 mile drive from home. Still, there was a chance Andy might earn a scholarship to an upcoming conference there, and he could see Dr. L. then. When that didn’t happen, he set aside the option as too expensive.

Discouraged, Andy dropped his search and the months flew by. Suddenly, he realized it had been nearly a year since his last surgery and resumed his quest in earnest. He looked up the manufacturer of a device used to treat anal dysplasia using infrared coagulation (IRC). Maybe they could help him find a clinic. The sales rep who finally called back suggested one that was eight hours’ drive away – not too promising. He also shared the phone number for a Ryan White grants manager in an adjacent state who’d just bought a unit for a new project. Unfortunately, Andy’s calls there were not returned.

Later that year, at the 2010 Gay Men’s Health Summit, he attended a session on HPV and once again spoke out. Responding to the presenter’s prescription for anal Pap smears, HRA, and treatment, Andy asked whether the speaker realized that most peoplehad no access to these things. Further, did the presenter realize that leading researchers had gone on record saying that providing anal Pap smears was unethical unless a system of follow up screening and care was in place? What were people to do?

One trusted researcher who happened to be in the audience suggested that perhaps a charge of malpractice should be made, but when pressed he admitted that it probably wouldn’t be a practical course of action. Andy recognized the PACHA chair in the audience and approached him with questions. Andy figured a number of HIV clinics already owned the equipment necessary to provide HRAs and were using them for colposcopies to reduce cervical cancer risk in women. Had they been bought with federal funds?

Could that fact somehow be leveraged to apply pressure or attract funding where it was needed?

Tired of investing his energy in what felt like a wild goose chase, Andy decided it was time for action.He was convinced that it was critical for me to have an HRA, to at least establish a baseline, regardless of the cost.When he got home from the conference, he emailed Dr. Langston to ask if his offer was still good, and got an affirmative (and affirming) response.

And cost him it would. Andy thought making a road trip out of the journey could be fun, but when he did the math he nixed the idea.Years of living with HIV had affected his energy level. That would mean extra motel nights. Counting that, the time away, and the gas plus wear and tear on his car, flying came in at about the same cost – almost half of his monthly income.

Andy logged onto a travel website and began making arrangements for his first high resolution anoscopy.

2 comments:

Ross D. Cranston MD is the Director of the Anal Dysplasia Clinic at the Magee Women's Hospital at the University of Pittsburgh Medical Center.It's a great place for excellent, state of the art screening and treatment for anal dysplasia.412-647-7228 option 4 then option 1.

The human body was designed to discharge waste. The colon rectum and anus work in one direction. The flow is outward. Anal intercourse is the reverse. Plunging something inward causes problems as it goes against the tissues. Why add another health problem? I have HIV/AIDS and use my body as intended.